Family Partner Update: Jakob and Andrea

We are happy to share an update from Andrea and her son Jakob, one of our incredible family partners on the network. Earlier this year, they travelled to the United States to participate in a rare disease clinical trial, accessing a treatment not currently available in Canada. Their story is inspiring but also underscores the urgent need for better access to clinical trials and treatments within Canada for patients with rare diseases.

RareKids-CAN continues to be dedicated to working towards transforming the Canadian rare disease landscape for all patients and their families. Our goal is to create more opportunities for patients within Canada and reduce the need to travel abroad to access lifesaving treatments.

You can continue to follow Andrea and Jakob's journey at jakoblittlefighter on Instagram, and you can read the full story on the UCLA Health news page.